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Newsletter Is Full of Special Information That I Know Will Be of Interest to You All GBS/CIDP Foundation of Canada Guillain-Barré Syndrome / Chronic Inflammatory Demyelinating Polyneuropathy Support, Education, and Research NewsNews & & Views Views Issue: 11 Fall/Winter 2012 Honorary Board Larry Brenneman (deceased) A Message from Susan Keast, Executive Director Serge Payer Our fall newsletter is full of special information that I know will be of interest to you all. I Kenneth Shonk, MD hope you have all had a good summer and that our upcoming winter will be kind to each of us. Executive Director Susan Keast As we look ahead to the end of 2012 and to the new beginning of 2013, there is much going on in the world of GBS and CIDP. We are once again planning our National Conference which will Officers Gail Kammer take place on Saturday, April 27, 2013. So mark your calendars and watch your mail box for your President & Secretary invitation to attend. It is a time to connect with others whom we have known for many years, and Howard Huss Vice President to look forward to meeting new members. It is always so special to let new patients and their families know that they are not alone, and that they now Board of Directors belong to our precious family. Make sure that you bring your questions to Sylvie Daigle Denis Dupuis the conference as its a day to get answers and to learn more about what is Howard Huss happening in our wellness and how to gain a better quality of life from Gail Kammer Sherry Nejedly better treatments, earlier diagnoses, and more doctors and neurologists to Ivan Sheppard connect with. No matter where you go in this world, there is a GBS or CIDP Barbara Sherman chapter where you can share experiences with others. No matter what our Demetrios Strongolos culture or language, we are all share in the same hopes and fears, and the Medical Advisory Board need to reach out to others who have experienced both GBS and CIDP. We are all ambassadors in Steven Baker, MD Brenda Banwell, MD making others feel and know that we are there for them. Thank you to all of you who reach out to Timothy Benstead, MD others, this is what makes our Foundation strong and working towards your better life. Pierre Bourque, MD Vera Bril, MD I have just come back from the Texas US International Symposium where I experienced Colin Chalk, MD fellowship at its best. It is never an easy job putting a conference together, and so I would like to Gillian Gibson, MD Angelika Hahn, MD congratulate the Foundation International in the US who worked so hard at making 400 plus Elizabeth Pringle, MD people very happy. The information is always overwhelming and it takes many weeks upon Zaeem Siddiqi, MD returning home to digest all that we have heard and been a part of. Jiri Vasjar, MD It was wonderful this time to have two Canadian Doctors as presenters at this Symposium and so many thanks to both Dr. Angelika Hahn (from London, ON) and Dr. Douglas Zochodne(from Calgary, AB). We hope to be keeping in touch with both of them as we continue on into 2013. Both Doctors are involved in interesting projects that we will be learning more about. We are also pleased to announce that Dr. Joel Steinberg who has written many of our GBS/CIDP booklets and the wonderful book – Guillain-Barré Syndrome – will be coming to Toronto to make the GBS presentation at our April conference. Bring your pen so that perhaps we can coerce him into doing some signing for us. I appreciate his time in coming to do this for us and he has also experienced having had GBS, so he knows first hand what you are going through. Our own Dr. Vera Bril will be doing the CIDP presentation and her assistant Dr. Hans Katzberg will also be taking a part in our Conference. P.O. Box 42016, 2851 John Street, Markham, ON, L3R 5R0 www.gbs-cidp.org/canada | Canadian registered charity: 887327906RR0001 Issue: 11 News & Views Fall/Winter 2012 A Message from Susan Keast, Executive Director (continued) The venue for this day will have some new people involved in workshops, so again please watch your mail for information that I know will interest you. Our many thanks go out again to our liaisons for the amazing work they do. Where would we be without their time and energy in giving back to others. They drive many miles to make visits to hospitals, they have meetings to share experiences and to meet others, and they raise awareness wherever they can. This is what we need, more people to lend a hand in raising awareness as we are still a very rare disorder that needs to get the word out. Each person can take an important role in making sure that "your Foundation" will grow and prosper and you will know that you have helped so many others with GBS and CIDP as well as their families. Please read all the liaison reports from those around the country who have met and made connections in their area. If you are thinking of doing something in your area, please contact Gail Kammer, our Regional Director for any questions or information you might need. Our future for the Foundation has never looked brighter and are very excited in moving forward. Thank you once again to those who have sent in their stories. Each one is so valuable not only of your experiences, but to the message that they bring to others. Whether it be a tough time for you or a bright and hopeful outcome, we celebrate all your victories and very much share in all your sorrows. We are always here to help. Susan Keast, Executive Director [email protected] Thank you CSL Behring Canada Inc for making this newsletter possible with an unrestricted educational grant GBS/CIDP Patient Survey by Vera Bril, MD A survey of GBS/CIDP patient’s was undertaken in early majority (86%) by neurologists, and by neuromuscular 2011 and ended in January 2012. The survey was open for physicians in 30%. Patients in this survey had their disease 240 days and 79% of individuals responded to the survey. for many years: 40% for longer than 10 years and for 6-10 Given this high response rate, it was years in about 15% with no real difference between those possible to extract some important who had GBS and those who had CIDP. information that is shared in this 89% reported having very severe disease early on. When report. asked about current status, 19% reported that they were in In this survey, the patients took the remission, and 16% had only mild disease. However, 42% lead in responding (>90% responders reported that they had moderate impairment and another were patients). Caregivers or family 15% had ongoing severe or very severe limitations. So, in members completed the surveys on this group, more than ½ had neurological impairment behalf of the other participants. Of interfering with their lives. At the time the survey was those responding, 2/3 were women, and the majority done, about 1/4 were not working primarily due to their (80%) were over the age of 50. There was a fairly even split disease, but 17% reported no effect on their ability to between those who had GBS and those with CIDP. Three- work. 1/3 reported that they were in remission and not quarters were diagnosed within 3 months, the great being treated currently. P2 GBS/CIDP Foundation of Canada Issue: 11 News & Views Fall/Winter 2012 GBS/CIDP Patient Survey (continued) When asked about previous treatment of their neuropathy, to 55% of GBS patients. 64% had received IVIG, 39% corticosteroids and 1/3 20% CIDP patients treated with IVIG did not have a plasma exchange. Another 1/4 had tried homeopathic change in disease status compared to 2/3 of those not medications. treated with IVIG, although the numbers were small. The CIDP and GBS patient groups were compared, but However, this would suggest that more of those on IVIG firm conclusions were not possible for individual items as improved compared to those who did not receive this the numbers in each group became too small for valid treatment. Of those on IVIG, 16% had marked changes in comparisons. About the same percentage of men and their clinical status compared to none of the patients who women had each diagnosis. were not treated with IVIG. In the GBS group, the numbers Time to diagnosis was a lot shorter for GBS with 58% treated with IVIG are too small to draw similar reporting almost immediate diagnosis compared to only comparisons. 4% of CIDP patients. Time to diagnosis was greater than 3 This survey had produced results that are thought- months for about 50% of CIDP patients and only 3% of the provoking. Many patients in this survey had suffered many GBS group. So, it is clear that CIDP patients are not getting years with their neuropathy. Diagnosis was delayed in diagnosed quickly, particularly when compared with GBS those with CIDP when compared to those who have GBS. patients. Although some patients recovered well, many still have For the worst state of disease survey item, there was no major neurological impairments. Fewer than 1 in 5 difference between GBS and CIDP patients in this survey. patients report no effect on their ability to work, or taken 52% of GBS patients compared with 46% of CIDP patients the opposite way, more than 4 out of 5 patients have were in the most severe levels (3, 4 or 5) and these ongoing limitation in their ability to work after developing these neuropathies.
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